We Don’t Have 5 years!!

The moment was awkward.

We had invited in a handful of patients who had the disease we were working to treat to our annual Development Team all-hands meeting.  We wanted to learn from them and to be motivated by them.

They poured their hearts out to us.  They told us about their lives since the moment they heard the diagnosis.  They shared how they were dealing with the prognosis – a death sentence with no effective treatments available.  They told us how their focus has shifted from their own situation to that of their children and grandchildren. This disease hit families and hit them hard.

We sat there silent.

Absolutely silent.

These patients were looking at us like we must not have heard them speaking.  They were desperate to hear something from us.  Some glimmer of hope.

I couldn’t take it anymore.  I was the one who built this team meeting and believed that hearing the patients’ voice would be so powerful.  I had to say something. Anything.

I explained that we were glad they came to spoke to us, that we all heard that had they told us, and that we were all moved.  However, we had been instructed that we really could not talk about our work for several legal and proprietary reasons.

And then I said it.

“We just want you to know that all of us are working our hardest to bring you a treatment that will really treat your disease.  Your stories will keep us going strong for the five years it is going to take.”

One of my dear colleagues jumped up and spun around with her finger wagging and her eyes filled with tears. “Shut up!” she yelled.  “Don’t you get it. These people don’t have 5 years.”

Stunned.

That moment is indelibly etched on my memory.

Something was broken.  We wanted to hear from patients.  We needed to hear from them.  And we needed to talk about our work with them.  But we couldn’t.  The rules of the process would not let us speak freely.  Our training and experience had not taught us how.  It was as if there was a wall between us.  All we could do was stand there silently in the dark.

And it was so obvious that the patients, and their families, could sense the other side of that wall.  It was like a one-way mirror where they could show us everything but all they could see was themselves.

The irony is that of all the drug development teams I ever worked on, this one was the most motivated.  We had an intimacy with these patients.  They had an ultra-rare disease and that meant that the community was quite small.  We knew them.  We knew their doctors.  We saw what they were facing, and this gave us a sense of great urgency.  We were working day and night to get the funding we needed, design a trial that would get us the answers we needed as quickly as possible, and navigate a regulatory path that no one had traveled before.  The cards were stacked against us and we took pride in proving the naysayers wrong.  But it was hard.

We couldn’t tell those patients all this.  Or so we thought.

I think back on that time now and get outraged.  We missed such an opportunity to learn, to share the problems we faced, and to get help from those patients we were trying to help.  Why?

We didn’t have the language to tell them what was going on without breaking the “rules”.  Even now, I am writing this without detail to stay in bounds.  They didn’t have the language to ask us the right questions to open us up.  Heck, no one knew what the right questions were.

We could not see all their struggles, the everyday challenges, the family conversations.  They couldn’t see the battles we were fighting.  Both sides were seeking the same goal and somehow, we could not see how we could help each other with anything more than the clinical trial.  We did not want to burden the patients with our own baggage.  We also had a pride that deceived us into thinking that they could not help anyway.

As I reflect on this event, I remember that the reason we started Salem Oaks was to help break through these walls.  This event put a fire in my belly that I had not felt for several years.  It is a fire that will only be quenched when patients are at the table, participating fully in the development of new treatments and cures.  The current system has been entrenched for decades, fortified by habits.  Change is never easy, but change must come, and it must come soon.

They don’t have 5 years.  No. WE don’t have 5 years!!

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Kevin Freiert

Kevin is the Principal of Salem Oaks Enterprises, LLC. Committed to working with patients, their advocates, biopharmaceutical companies, regulators and other stakeholders to develop educational tools that help patients bridge the gap between themselves and Biopharma R&D.

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Photo by Daniel Garcia on Unsplash

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